Thyroid UK

All the symptoms and a goitre but they won't listen to me

All the symptoms and a goitre but they won't listen to me

I have felt unwell for about 5-6 months. I have put on weight even though my diet has not changed. I feel freezing cold or sweating hot. My fingers tingle and I have numbness in several of them. I am dog tired even though I sleep. I am so emotional and the slightest things cause me to burst into floods of tears.I am so constipated it's ridiculous, and my nails are breaking off. My father has an under active thyroid so I thought I should get it checked. I went to my gp who arranged blood tests. Whilst I was waiting for the results a goitre came up on my right side. I was sent for an u/s and fna. It came back as a 3.5 graded solid mass which I have arranged to have removed. They don't think it's cancer but can't be sure. I was seen by the endo he said none of my symptoms were to do with my thyroid as the tsh levels were normal but he said the mass needed to be removed so reffered me to an ENT guy. I asked for them and was given the TSH levels for the two separate blood tests I had recently and the T4 and that's all they tested. I have been told by the ent surgeon that removing the goitre will have no affect on my symptoms.

So before the goitre my results were TSH 4.96 T4 9.1

After the goitre came to TSH 3.4 T4 9.6

So if this is all normal why do I feel so unwell? I am at my wits end trying to get someone to listen to my symptoms not just look at the test results. My hair is now falling out when I brush it. I'm 49 not 89!!

Can anyone help me. The goitre is being removed on 7th August.

Thanks for reading see my photo of the goitre. You can see how rough I feel. Not my best photo

Lori

11 Replies
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Hi lorilou107 I'm so sorry to hear that you are going through this. Many have been told this same story, that because our blood tests show figures within the normal range, that it is not our thyroid giving us issues, including myself.

Start by informing yourself because you will need to debate a few doctors and endos who know nothing about the thyroid, and inform them about your problems. I was finally medicated after begging my doctor for a trial on thyroid medication and I was begging for 6 months before they gave in. I'm now on my 7th week on T4 and I feel a bit better. This proves that it was my thyroid.

There are different ways of going forward, i.e. finding a better doctor, self-medicating, etc, and I hope the more experienced members can advise and guide you to what will help. If you are in the UK, you have better luck than most because Thyroid UK has a data base of doctors who can treat you, who are more knowledgeable than most doctors.

((((((hugs)))))

I really hope you find a breakthrough, and do post the ranges of your blood tests, and not just the result because labs differ.

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Lorilou, NICE guidelines state that doctors can prescribe Levothyroxine on a trial basis, if there are symptoms which could be thyroid related, but the blood tests are within the so called 'normal' range. Your T4 looks low, but you need to put the figures in brackets after the number, because they vary from place to place.

Here is the extract and the link. You could copy this off and show to your doctor.

cks.nice.org.uk/hypothyroid...

' If TSH is between 4 and 10 mU/L and FT4 is within the normal range

In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.

In older people (especially those aged over 80 years), follow a 'watch and wait' strategy, generally avoiding hormonal treatment. If a decision is made to treat, prescribe LT4 and recheck TSH two months after starting and adjust the dose accordingly.

'

You may never find a doctor who listens, lots of them don't in my experience. They are obsessed with numbers and not interested in symptoms. Have you thought of getting your T3 done privately and then self-medicating? Here's some information on private testing:

thyroiduk.org.uk/tuk/testin...

I've sent you a private message about where to get NDT.

Good luck with your operation.

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Hi, thanks for your speedy response. The figures I have put are the only figures I was given and I had to beg to be given those. The Endo says my results area normal and the ent surgeon says the same but he didn't even know what T 3 and 4 really showed. I am going private for this operation as it takes so long to get anything done in the nhs. If the symptoms are still there after the goitre has been removed then I will pay for the private tests.

It's ridiculous I feel so unwell in every way I'm not imagining my symptoms. Oh and now my voice has gone hoarse but apparently thats not being caused by the goitre either! !!

I hope I do go hypo after the operation, at least I might get some treatment.

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Thank you for posting, it is a very clear picture. Your thyroid has enlarged in order to produce more essential hormone, when you remove part of it you will probably go Hypo. I often wonder if I had been treated with hormone first whether I would have had to have my lump removed. For hair loss it could be low minerals/vitamins B12/folate/biotin/iron - have you had these tested? I was in pain due to low Vit D. You need to ask for additional tests including Thyroid antibodies. Best wishes, Jane :D

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You must be feeling quite bad and just for some information, if you cursor down the following link you will read/see about goitre.

web.archive.org/web/2010032...

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Hi, thanks for your speedy responses. The figures I have put are the only figures I was given and I had to beg to be given those. The Endo says my results area normal and the ent surgeon says the same but he didn't even know what T 3 and 4 really showed. I am going private for this operation as it takes so long to get anything done in the nhs. If the symptoms are still there after the goitre has been removed then I will pay for the private tests.

It's ridiculous I feel so unwell in every way I'm not imagining my symptoms. Oh and now my voice has gone hoarse but apparently thats not being caused by the goitre either! !!

I hope I do go hypo after the operation, at least I might get some treatment.

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Hi lorilou107,

Your story sounds familiar. If you have time read my profile and updates. Might come in handy later. Long journey, but you will feel better after surgery.

Tamzin27

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You have a right under the Data Protection Act for a copy of your test results. What do they think is causing your symptoms then? Bonkers.

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I've seen other people with a goitre and "normal" blood results writing in to the forum i.e. normal according to a sadist. They were told the same as you, that their symptoms weren't due to their thyroid.

I've always meant to ask... What do these idiotic doctors tell you has caused your goitre if you don't have a problem with your thyroid? And what do they think your hypothyroid symptoms are caused by if they aren't caused by your thyroid?

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It's mad isn't it. Why would a goitre have suddenly appeared unless I was hypo and the body hasn'tbeen making enough thyroxine so it's pushed the thyroid to make more which is why it's sticking out now. When the endo told me that I can't have hypothyroidism because my tsh levels are normal and he thinks the tingling and numbness in my fingers is completely unrelated I lost any faith I had that I was going to get treatment. I askedif he would consider a trial of medication as I felt so unwell but he said I Don'thave symptoms of hypothyroidism! !! Really!!!! What, weight gain, constipation to the point of hardly ever being able to go, feeling freezing cold, boiling hot, tearful at the drop of a hat, brain fog, extreme fatigue, oh and a large goitre. .. but no, the tsh levels were normal aghhhhhhhhh oh and my dad is hypothyroid and takes levi.

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Your doctor is perfectly correct, believe me. With a TSH like that you are hypothyroid and after the removal of the goitre, if your dose of levo stays the same, you will be equally, or even worse, hypothyroid. Therefore, he maintains, your goitre was not the cause of your multitude of problems.

What a plonker!!!

If this is the way that thyroid disorders are treated, we are all doomed.

Get the goitre removed as it can be quite dangerous, strangling you or giving you continual bouts of pneumonia from the inability to breathe properly. Then get your levo increased to get the TSH down to BELOW ONE, which is the optimal level, not just anywhere within the mysterious "normal range" which should be used solely to determine whether you should be started on levo.

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